South Asian immigrants’ and their family carers’ beliefs, practices and experiences of childhood long‐term conditions: An integrative review


 The aim was to examine South Asian immigrants' beliefs, practices and experiences of childhood long-term conditions.
 This was an integrative review.
 MEDLINE, PsycINFO, PubMed, Scopus and Web of Science were searched for primary peer-reviewed articles published in English between January 2011 and April 2021.
 Articles were screened based on PRISMA guidelines. The quality of the studies was evaluated using the Critical Appraisal Skills Programme Checklist for qualitative studies and the Joanna Brigg's Institute Critical Appraisal Checklist for quantitative studies.
 Fourteen studies were included in the review. South Asian immigrant children and their family carers experienced cultural clashes as they attempted to incorporate their cultural beliefs about long-term conditions into a more westernized biomedical approach. Families were overburdened by caregiving and struggled to find additional support for their children. The main findings were categorized into three themes: (1) cultural beliefs; (2) religious, spiritual and complementary and alternative medicine practices and (3) care and support of the child.
 Health-care providers should use a combination of culturally safe management strategies and a nuanced approach to educational initiatives on the biomedical aspects of various long-term conditions to effectively engage South Asian immigrant families with health services.
 The growth of South Asians worldwide along with the increased burden of long-term conditions among South Asian immigrant children has implications for health service delivery. However, no reviews to date have explored South Asian immigrants' experience of childhood long-term conditions. Incorporating South Asian immigrants' beliefs and practices into the plan of care promotes collaborative decision-making that can lead to better treatment adherence, improved health outcomes and higher patient and family satisfaction. The findings encourage clinicians, researchers and policymakers to develop culturally safe child/family-centred interventions to address the specific needs of South Asian immigrant children with long-term conditions.



| INTRODUC TI ON
South Asian (SA) countries continue to be the main sources of international migration (Batra et al., 2019). Geographically, South Asia comprises countries such as Pakistan, India, Nepal, Bhutan, Bangladesh and Sri Lanka (Mann, 2014). However, countries differ in their definition of the SA group. For instance, in New Zealand, the term SA also includes people of SA descent who are from Malaysia, Fiji and other countries (Didham, 2010). In the United Kingdom (UK), the SA group refers mainly to the population from the Indian subcontinent (Liu et al., 2016). Despite geographic, religious and linguistic differences, SAs share many unique cultural norms and social values that may influence their health-care beliefs and practices (Ramaswamy et al., 2019). The growth of SAs worldwide along with the increased burden of long-term conditions (LTC) among children has implications for health service delivery (Liu et al., 2016). In addition to the difficulties encountered by any parent of a child with a LTC, the context of being an immigrant makes some experiences, especially daunting (Englund & Rydström, 2012).

| BACKG ROU N D
SA immigrant children are particularly vulnerable in terms of morbidity and mortality from LTC (Lakhanpaul et al., 2020;Zechella & Raval, 2016). For example, SA children in the UK are more likely to present with uncontrolled asthma symptoms and become hospitalized with acute asthma exacerbations compared with their White British counterparts (Lakhanpaul et al., 2020). These hospitalizations are often identified as potentially preventable. Similar ethnic disparities in asthma outcomes have also been noted in the USA, New Zealand and Canada (Benchimol et al., 2015;Lakhanpaul et al., 2020;Mehrotra et al., 2014;Mehta, 2012).
Health disparities among SA immigrants may be the result of beliefs and practices that contrast with that of health-care professionals' (HCP) advice who are obliged to follow evidencebased (EB) guidelines where available (Lakhanpaul et al., 2019).
The philosophy of child-and family-centred care (CFCC), which has been widely practiced in paediatrics for decades, is central to reducing health disparities (Ford et al., 2018;Gerlach & Varcoe, 2020;Watt et al., 2011). CFCC involves HCPs listening to and respecting families' and children's perspectives, ensuring that their priorities, knowledge and beliefs are appropriately integrated into all aspects of care planning and delivery, as well as providing accessible and timely information that supports their participation in decision-making at a level suitable for their maturity and understanding (Gerlach & Varcoe, 2020). However, a growing body of literature indicates an inconsistency in the implementation of CFCC in practice, particularly among immigrants. This could be due to several factors, including a lack of culturally congruent care, insufficient organizational support, budget constraints and cuts to human resources and services. The challenge for health-care services is to maintain a balance between the child's best interests, respect for the family and community as a unit and professional expertise to provide optimal care for the child (Watt et al., 2011).
With the large-scale migration of SAs worldwide, more HCP will encounter this group of people. No reviews to date have explored SA immigrants' experience of childhood LTC. However, a few reviews that examined the experiences of childhood LTC among SAs included studies on SAs in both minority and majority settings. Although there is some degree of generalizability of these findings to SA immigrants, it may not be an accurate representation of their illness experience in their host country. SAs may experience ongoing social and cultural transitions because of migration, which may impact their health behaviour and utilization of healthcare (Ahmed et al., 2018). Therefore, exploring SAs' cultural needs and incorporating them in the host country's model of care becomes crucial to the optimal management of childhood LTC. To the best of our knowledge, the current review is the first of its kind to explore SA children's and their family carers' experience of LTC in their host country.
Simultaneously, listening to the voices of SA immigrant children with LTC is as important as that of their family carers to effective management (Lakhanpaul et al., 2019). However, studies on childhood LTC among SA immigrants predominantly focus on the voices of family caregivers and HCP. Only a few studies seek to give voice to SA immigrant children. This is despite Article 12 of the United Nations Convention on the Rights of the Child (UNCRC) which articulates the significance of giving voice to children in all matters affecting them (Lakhanpaul et al., 2019). The current review addresses this gap by examining studies with first-and second-generation SA immigrant children and young people, as well as studies involving first-generation SA family caregivers.

| CON CEP TUAL FR AME WORK
The tenets of Social Constructionism served as the conceptual framework to conduct this review. First introduced by Berger and Luckmann, social constructionism is based on the principle that the meanings of social reality are not discovered but constructed by people as they interact in a given context. This concept is widely used to explain the concept of illness (Berger & Luckmann, 1991;Burr, 2003;Conrad & Barker, 2010). Burr (2003) considers illness as a socially constructed phenomenon rather than a fixed physiological entity. Perceptions of illness vary with the values, beliefs and norms of the group of people being studied. Social constructs related to illness differ not only with groups of people but also policymakers to develop culturally safe child/family-centred interventions to address the specific needs of South Asian immigrant children with long-term conditions. with place and time (Berger & Luckmann, 1991;Burr, 2015). For example, people's constructs about an illness may vary as they move settings such as when they migrate. There may also be a change in these constructs as they experience illness over time.
For instance, following diagnosis, people may regularly seek and process new information about the condition which may result in a change in attitude towards the illness and resultant behaviour (Burr, 2015;Gergen, 2015;Gupta, 2010). The current integrative review posits that SA immigrant children with LTC and their family caregivers construct their own interpretations of reality and shared meanings about various LTC. These constructs exist in a specific social, cultural and historical context and may change over time (Burr, 2015;Gergen, 2015).

| Aim
The aim was to synthesize primary research on SA immigrant children's and their family carers' beliefs, practices and experiences of childhood LTC.

| Design
The modified integrative review framework developed by Whittemore and Knafl (2005) guided this literature review. The main feature that distinguishes an integrative review from other types of literature reviews is its scope; the flexibility in including diverse methodologies (both quantitative and qualitative), empirical and theoretical literature. High-quality integrative reviews can guide the development of evidence-based policy and practice initiatives and make recommendations for future research (Knafl & Whittemore, 2017). Integrative reviews play a key role in transcultural nursing as they allow exploration of complex inherent concepts related to the health-related beliefs and practices of people from diverse backgrounds (Whittemore & Knafl, 2005). However, the key challenge in conducting an integrative review is ensuring rigour as it combines a large volume of data from primary research that employs various methodologies.
To address this issue, Whittemore and Knafl (2005) and Knafl and Whittemore (2017) developed systematic methodological strategies specifically for each stage of the review process, thus making it popular as a standard framework for undertaking integrative reviews.

| Search methods
Five electronic databases were searched: CINAHL, MEDLINE, PsycINFO, PubMed, Scopus and Web of Science. The following keywords and phrases were used: asthma, wheeze, respiratory, eczema, cancer, diabetes, autism, developmental, congenital, illness, sickness, health, chronic, long term, South Asia, India, Pakistan, Bangladesh, Punjab, Gujarat, child, paediatric, adolescent, teenage, young adult, migrant, immigrant, care giver, carer, caregiver, parent and family. Modifications were made to the search strategy to fit each database.
Boolean operators such as 'AND' and 'OR' combined the keywords.
In some databases, truncations such as asterisks (*) were used with the root forms of the keywords to retrieve all the related variant terms and quotation marks ("") to indicate phrases (See Table S1). The database search was limited to the years 2011-2021 due to two reasons; firstly, to review the most up-to-date studies and secondly, due to the last decade seeing the largest migration of SAs (International Organisation for Migration, 2019). The online database search was supplemented by ancestry searching, citation searching and manual searching of selected journals. Table 1 lists the inclusion and exclusion criteria applied to the literature search.

| Search outcome
Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines were used for the article selection and screening procedure (Moher et al., 2009) (See Figure 1). The first two authors, Indu Sudarsan (IS) and Karen Hoare (KH), independently examined the titles and abstracts from the initial search. Those articles that met the eligibility criteria were chosen for full-text review (See Table S2). IS and KH separately reviewed the full-text articles and then jointly if there was any doubt or disagreement.

| Quality appraisal
The quality of the studies was evaluated using the Critical Appraisal

| Data abstraction and synthesis
A data display table was used to present the data extracted from each study which included information on the author, year of publication, country, study objectives, sample characteristics, chronic condition, study design, research methods and key findings. Data analysis involved identifying the constructs of beliefs, practices and experiences from each study. A constant comparison approach was employed to facilitate the identification of patterns, variations, themes and relationships when analysing the data. The main findings were categorized into three themes: (1) cultural beliefs; (2) religious, spiritual and complementary and alternative medicine practices and (3) care and support of the child. Table 2 shows the characteristics of the 14 studies included in the final review. Most studies were qualitative (n = 13) and used a wide range of methodologies such as Interpretative Phenomenological Analysis (IPA), Grounded Theory (GT), case report, descriptive design, constructivist interpretative paradigm and ethnography.

| Characteristics of the studies
The only quantitative study included in the review used an online survey. Most studies were conducted in the UK (n = 8) with the rest conducted in the United States (n = 4), Canada (n = 1) and Ireland (n = 1). The LTC included: Asthma (n = 3), autism (n = 3), cancer (n = 1), beta-thalassemia major (n = 1) and developmental disabilities/intellectual disabilities (n = 6). The age of participants ranged from 2 to 23 years. The majority of studies had parents or grandparents as informants (n = 11). One study included a comparison group of 17 White British parents. Two studies included children as the sole participants, one study was a case report on children and another study included a children-parent dyad as the focus of observation for an ethnographic study. The sample size ranged from 3 to 66 with a total of 266 participants.

| Key findings
When interpreting the findings, it is important to remember that SA ethnic groups are diverse and that the health beliefs, practices and experiences discussed may not apply to all SA immigrants.

| Theme 1: Cultural beliefs
Several beliefs existed about the causes, symptoms and management of childhood LTC (Croot et al., 2012;Daudji et al., 2011;Habib et al., 2017;Heer et al., 2012;  Primary studies included (n = 14) Records excluded: Not meeting inclusion criteria (n = 317) Records excluded (n = 5) Reasons for exclusion: Secondary data analysis (n = 1) Findings specific to SA immigrants could not be extracted (n = 4) significantly influenced their child's attitudes towards their illness and its management. Despite the chronic nature of their child's condition, some family carers believed that it might 1 day be cured. A significant amount of time and money was spent on experimenting with different remedies and there were often feelings of disappointment when a child did not respond as expected (Croot et al., 2012;Daudji et al., 2011;Habib et al., 2017;Lakhanpaul et al., 2017;Theara & Abbott, 2015;Zechella & Raval, 2016). In the case of childhood asthma, family carers sometimes limited the use of inhalers unless there were symptoms because they considered asthma to be an acute condition (Lakhanpaul et al., 2017).   (Lakhanpaul et al., 2017). Mothers were blamed for their child's illness based on such beliefs. SA parents believed that asthma is triggered because of a hot-cold imbalance. According to the hot-cold theory, illness occurs when the body's equilibrium is disrupted by being excessively hot or cold (Roodaki et al., 2018). SA immigrants expected asthma flare-ups if their children had physically cold foods or foods with a cold base (banana, yogurt, grapes, etc.), had a cold shower or were improperly dressed. Many of them held a misconception around activities as a trigger for asthma exacerbation which resulted in the imposition of restrictions on a child's activities (Lakhanpaul et al., 2017;Lakhanpaul et al., 2019;Mehrotra et al., 2014 (Croot et al., 2012;Daudji et al., 2011;Habib et al., 2017;Heer et al., 2012;Heer et al., 2015;Kelly & Kelly, 2013;Lakhanpaul et al., 2017;Lakhanpaul et al., 2019;Mehrotra et al., 2014;Mufti et al., 2015;Ravindran & Myers, 2013;Theara & Abbott, 2015;Zechella & Raval, 2016).

SA family carers used Complementary and Alternative Medicine
(CAM) for their children believing that it had fewer side effects but was as effective as Western medicine (Daudji et al., 2011;Habib et al., 2017;Heer et al., 2015;Lakhanpaul et al., 2017;Lakhanpaul et al., 2019;Mehrotra et al., 2014;Mufti et al., 2015;Ravindran & Myers, 2013;Theara & Abbott, 2015;Zechella & Raval, 2016). Ravindran and Myers (2013) found that many Indian immigrant parents of children with autism adopted a combination of modern treatments and traditional Indian treatment methods (e.g., used Homoeopathy, Ayurveda, Yoga, music therapies, etc.) to ensure the best possible care. Although CAM was used as an adjunct treatment in most childhood LTC, these practices were especially popular in the case of childhood asthma as parents were concerned about medication side effects, predominantly steroid addiction (Mehrotra et al., 2014). Parents were frequently pressured by their extended older family members to use traditional medicine or other natural treatments for a cure (Heer et al., 2015;Mehrotra et al., 2014).

| Theme 3: Care and support of the child
Although mothers were typically the primary caregivers in most SA immigrant families, they received enormous support from their spouses in childcare (Croot et al., 2012;Daudji et al., 2011). Mothers stayed at home or worked part-time to care for their children. Caring for their children with LTC was reported as physically and emotionally exhausting. They made personal sacrifices with respect to paid employment or self-care, prioritizing the well-being of the child and the family. Mothers balanced multiple roles ranging from being a fulltime caregiver to that of an advocate for their child (Croot et al., 2012;Daudji et al., 2011;Heer et al., 2015;Kelly & Kelly, 2013;Lakhanpaul et al., 2017;Lakhanpaul et al., 2019;Zechella & Raval, 2016). They encountered challenges with HCP and school staff to ensure optimal care for their children (Croot et al., 2012;Habib et al., 2017;Kelly & Kelly, 2013;Lakhanpaul et al., 2017;Ravindran & Myers, 2013;Zechella & Raval, 2016).
Schools were one of the main sources of support and school services were widely acknowledged as important to the child's wellbeing (Croot et al., 2012;Habib et al., 2017;Lakhanpaul et al., 2019;Mufti et al., 2015;Ravindran & Myers, 2013). For children with developmental disorders, some parents found school valuable because it provided them with time away from their children and others found their children learnt new skills (Croot et al., 2012). In contrast, participants also expressed their dissatisfaction with the school system for a variety of reasons, including peer bullying, discrimination from school staff, lack of resources including adequately trained staff, administrative bureaucracy and poor services (Croot et al., 2012;Habib et al., 2017;Mufti et al., 2015;Ravindran & Myers, 2013;Zechella & Raval, 2016).
The findings from the review on informal support systems were mixed. Children described their parents as an enormous source of support throughout their illness journey (Lakhanpaul et al., 2019;Mufti et al., 2015). They also reported negative consequences related to parental care that led to overindulgence and overprotection, which reinforced children's perception of being different (Mufti et al., 2015).
Lack of extended family support in the host country was a major concern (Croot et al., 2012;Habib et al., 2017;Ravindran & Myers, 2013;Zechella & Raval, 2016). Some of the studies of participants with asthma and cancer found that carers relied substantially on family and relatives for support. However, studies reporting on children with developmental disabilities revealed that they received little assistance from their extended family network (Croot et al., 2012). Parents with children who had physical and mental disabilities experienced loneliness. They struggled even if they had their extended families in the host country because they did not accept these children due to stigma or challenges related to providing care (Croot et al., 2012). According to a study conducted by John et al. (2016) among Indian immigrant parents of children with developmental disabilities, a negative link was identified between the parents' reported quality of social support and their stress levels. In this study, the most important source of support for the participants was their spouse, followed by support groups and friends, with HCP at the bottom of the list.
Family caregivers and children expressed diverse feelings about the health-care services they received. HCP were appreciated for the informational and emotional support provided which helped them cope with their challenges. Simultaneously, negative experiences with HCP included a range of areas: lack of proper care during pregnancy resulting in child's illness, delay in getting a diagnosis, not being listened to, showing culture blaming and a discriminatory attitude, poor service quality, etc (Croot et al., 2012;Heer et al., 2015;Kelly & Kelly, 2013;Lakhanpaul et al., 2017;Lakhanpaul et al., 2019). In the study by Lakhanpaul et al. (2019), some children expressed their concern about feeling 'left out' during doctors' consultations, which they highlighted as more family carer-centred discussions. Additionally, one of the significant barriers to building meaningful relationships with HCP was limited English proficiency which also restricted the family carers from seeking timely care (Croot et al., 2012;Heer et al., 2015;Lakhanpaul et al., 2017;Mehrotra et al., 2014).
Many studies found that health service uptake was low among Indian immigrant parents with certain LTC such as developmental and intellectual disabilities (Croot et al., 2012;Heer et al., 2012).
Even if they used services, they accessed generic welfare services such as daycare, rather than specialist options and long-term respite services. According to the studies, one possible explanation is that most SA children grew up in two-parent families, and children from such households were less likely to use formal services. Poor knowledge about the health-care system such as availability and accessibility of services was yet another key barrier to health service utilization. Barriers in accessing health services included challenges with appointment accessibility, long waiting times, after-hours access, language barriers, lack of trust in the host health-care system, etc (Croot et al., 2012;Heer et al., 2015;Lakhanpaul et al., 2017;Mehrotra et al., 2014).

| DISCUSS ION
The findings of the review suggest that SA immigrant children's and their family carers' interpretations of LTC are predominantly based on their sociocultural influences and often contrasts with the biomedical models (Heer et al., 2015;Lakhanpaul et al., 2017;Ravindran & Myers, 2013;Theara & Abbott, 2015). For example, the biomedical model shapes people's perceptions of autism by portraying disability as a deficit and children with disabilities as those who need to be fixed (Bagatell, 2010). Social models, on the other hand, argue that disability is a socially constructed concept, with the sociocultural context having a substantial impact on how children, their families and the wider society view and manage disability (Theara & Abbott, 2015).
The findings, consistent with the social models, reveal a complex interaction of various sociocultural factors such as cultural beliefs, religious, spiritual and CAM practices and migration influencing SA immigrants' experiences of childhood LTC (Heer et al., 2012;Heer et al., 2015;Lakhanpaul et al., 2017;Mehrotra et al., 2014;Ravindran & Myers, 2013;Theara & Abbott, 2015). This is commensurate with Ahmed et al.'s (2018)  On the other hand, SA immigrants may also assume that HCP share the same tacit understanding as their own. The findings, therefore, reiterate the call for HCP to be proactive by asking culturally relevant questions to elicit the SA immigrant children's and family carers' cultural needs and expectations (Englund & Rydström, 2012 (Lakhanpaul et al., 2014). For instance, an awareness of the close-knit family and community structure of SA families will allow HCP to consider the involvement of extended family members and community experts as a part of the decision-making process. Simultaneously, HCP should be aware that the extended family and community can be a source of both support (informational, instrumental and emotional support) and stress (contradictory views about treatment options and stigmatizing attitude) for the SA family carers and children. Therefore, the exploration of complex family dynamics becomes crucial when working with these families (Daudji et al., 2011;Heer et al., 2015;Theara & Abbott, 2015).
Additionally, HCP must realize that cultural safety cannot be attained through the application of generalized cultural assumptions (Curtis et al., 2019;Englund & Rydström, 2012;Heer et al., 2015).
Although This is significant because an immigrant family's length of stay in a country may influence their health-care choices. All these limitations should be considered when interpreting the findings of the review and when designing future studies.

| IMPLI C ATI ON S FOR HE ALTH -C ARE PR AC TI CE AND RE S E ARCH
The review demonstrates the significant influence of the sociocultural context in reinforcing the meanings ascribed to childhood LTC management among SA immigrants. Hence, HCP should consider the collectivist cultural nature of SA immigrants when planning interventions for this ethnically diverse population. This could be accomplished by integrating cultural assessments into treatment care pathways. The findings have implications for health-care delivery in general since they emphasize the importance of cultural safety.
Longitudinal studies on how SA family caregivers gain the expertise to manage their child's illness might help determine the best strategies to support these families. The methods for researching experiences of a SA immigrant child with an LTC are dominated by face-to-face interviews. A broader population can be reached by offering alternative data collection options such as Internet-based research methods alongside the traditional ones. This approach will allow eliciting the views of those who choose to remain anonymous.
The current review showed a dominance of family carer-oriented studies despite the increasing emphasis on giving voice to children in all the matters affecting them. Therefore, more child-centred research using child-friendly data collection techniques must be undertaken to obtain a unique and detailed understanding of the experiences of these children. Additionally, future studies should include a wide range of LTC as well as SA immigrant children from non-English speaking countries. Furthermore, future studies should focus on analysing the health beliefs and practices of individuals in each SA country rather than the entire SA population.

| CON CLUS ION
The

ACK N OWLED G EM ENTS
The authors wish to acknowledge Massey University for the doctoral scholarship awarded to the first author, Indu Sudarsan. Massey University [Correction added on 17 May 2022, after first online publication: CAUL funding statement has been added.]

CO N FLI C T O F I NTE R E S T
No conflict of interest has been declared by the authors.